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Medical Forum / General / Vision / May 2005Do BRAOs really cause permanent blindness? HELP!
I am a 31 year old woman who recently had carotid stenting on my right side due to a narrowed and ulcerated carotid. That, however, isn't why I'm posting here. I had three episodes of ocular emboli lodge in my eye. One right off the ocular disk and the other two were further down stream. I have had a blind spot in the top half of my field of vision since december, despite the fact that blood is now getting around the clot. This new embollism is cutting off blood supply to the rest of my central vision and a angiogram proved that no blood is getting around it. Bottom line is that none of the doctors I have seen are optimistic about my getting my vision back. That just isn't acceptable to me. I am only in my early thirties, and most of these BRAOs occur in older people, not in people my age. This leads me to believe that there hasn't been a significant amount of research done in people my age with this affliction. Has anyone out there ever heard of a BRAO ultimately resolving and the vision returning? Are there any herbal medications (i've heard that bilberry and ginko supposedly help the retina) that I could try? Are there any major hospitals doing currently doing research on this? My doctors have told me that the retina is basically brain tissue and once deprived of oxygen, the tissue dies. I simply can't believe that there is NOTHING that can be done. And the fact that every single one of my doctors has completely destroyed any bit of hope that I have is truly unbelievable. Is there anyone out there who's had/seen/treated/heard about a situation like mine? Please let me know. >I am a 31 year old woman who recently had carotid stenting > on my right side due to a narrowed and ulcerated carotid. [quoted text clipped - 30 lines] > Is there anyone out there who's had/seen/treated/heard > about a situation like mine? Please let me know. Lots of research about treatment has been done and continues to be done about BRVO, the process does not vary with age. There is often some recovery of vision in the 6 to 12 month time frame. There are some experimental surgical procedures-- you will need to consult a sub specialist at a teaching hospital to discuss whether your particular case is suitable. Herbals will not cause retinal tissue to regenerate. Unfortunately, if your retinal tissue has sustained enough damage to die, it cannot recover. Your doctors have likely done testing of the tissue to see what shape it is in. Although it is hard to accept that you have suffered permanent loss, it may be true. Ask your doctors to suggest a social worker who can help you manage your emotions about your loss. For more information see: http://www.emedicine.com/oph/topic386.htm Dr Judy Dear Dr. Judy, Thank you so much for your answer. I'm really at my wit's end here. However, you provided me with information and a link to Branch Retinal VEIN occlusion, and I am suffering from a Branch Retinal Artery Oclusion. Do the outcomes for both of those conditions vary? And what tests can doctors do to tell if the tissue is irreversibly damaged? Is it different from a fluorescine angiogram? Is it a non-invasive procedure, or do they actually have to remove some of the tissue to determine the severity of the damage? And I simply cannot give up hope and simply accept my vision loss. It's too difficult and I am too stubborn. I have a two year old, whom I'd like to be able to see clearly as she grows up. I'm a writer/editor whose job function relies upon my ability to see clearly. I truly can't believe that the only suggestions I've been given by doctors at top Boston hospitals are to breathe into a paper bag or massage my eye in order to bring back my vision -- with the only alternative being a lifetime of impaired vision. With modern medicine being what it is, how is something like this possible? >And I simply cannot give up hope and simply >accept my vision loss. It's too difficult and I am [quoted text clipped - 8 lines] >with the only alternative being a lifetime of >impaired vision. "Letting go" doesn't mean giving up hope OR accepting vision loss, medically. It means doing the best that you can--with whatever resources that can assist you--to stay sane, whole, healthy, and functional *while* you pursue the cure, find out what it will take to manage your career, and be a loving mom to your daughter. I'm 41, disabled, and in chronic pain from eye problems for which there are no known cures. I'm a former triathlete, corporate VP, reader, motorcyclist, writer, rollerblader, world traveler, etc., etc. No more. I'm a patient now. But believe me: I have NOT given up. I just spend a decent amount of time trying to make sure I'm a healthy person and a loving husband *while* I pursue different answers, work with the doc's on this group, and monitor the science to the extent that *my* eye problems will allow. This has happened to me three times before. Each time, I've figured out how to get back to work. I believe that I will again. NEVER give up. Letting go is something different. I've heard it said that stress is defined as the failure to get what you expected. What you're going through must ab-so-lute-ly suck. I can't imagine. But I CAN imagine that you may need help to cope while you fight this fight. It takes a village. Do you have a village behind you? I wish you all the best. I can't tell you how profoundly I offer those words to you. Feel free to e-mail me if you wish.... Neil Neil, Your posting touched my heart and even made me cry. Thank you for your inspiring story and words of encouragement. I am lucky to have a very supportive family to help me through this difficult time. It sounds like you have a strong support system in place to help you through your own health issues, which is great. However, I'm so sorry to hear that you are in chronic pain due to your eye problems. Have you tried any alternative therapies to help ease the pain? My husband's co-worker suggested that I look into something called Qigong -- a form of Tai Chi where the body heals itself. Has anyone heard about that actually working? Gudrun, Thanks for the info about your mom. That gives me some hope! Sorry to hear about your own vision loss. What was the cause of that? And why do they think it is not recoverable? William, I don't know what my acuity is in my right eye, but I do know that I have a large black spot just above midline that is about 30 percent of my entire vision and a new spot has formed just below midline, which is another 30-40 percent of my vision. All I've been left with in my right eye is a tiny hairline of vision across the center and my peripheral vision. Thank you to everyone who's posted. If you know of any hospitals or alternative therapies that have been successful in regenerating impaired vision, please let me know. Thanks, Megan > William, I don't know what my acuity is in my right eye, > but I do know that I have a large black spot just above [quoted text clipped - 3 lines] > is a tiny hairline of vision across the center and my > peripheral vision. OK please find out what the "best corrected acuity" of BOTH EYES is and report back. It's pretty much impossible to give advice without knowing these numbers. If you really lost 30% above and 40% below the "midline", you have been left with more than a hairline of vision. You'd have more like 30% of the central vision, which could be even 20/20 in that eye. I don't mean to minimize your loss, but it seems to me that you have some functional vision remaining in the worst eye, and as far as I can tell, more or less perfect vision in the other. Am I off base here????? bill > Dear Dr. Judy, > Thank you so much for your answer. I'm [quoted text clipped - 24 lines] > With modern medicine being > what it is, how is something like this possible? Having some vision loss myself that according to doctors is not likely to be recoverable, I fully understand how you feel. However, I thought it might be helpful to let you know that my mother suffered from a branch retinal arterial occlusion last August, and since that time she has recovered a considerable amount of her lost vision. Her retina specialist told her that many times the blood vessels find new pathways and apparently that is happening for her. So don't give up--a central occlusion is worse and can blind you, but from what I've read with a branch occlusion the outcome is often fairly good. My mother is 86 and if she was able to regain a lot of her vision, I would hope your chances are even better. Good luck- Gudrun It's not entirely clear from your posts exactly how much vision you've lost. I must assume the other eye is perfectly fine, and you've lost some superior field in one eye, and maybe now some central acuity, but you didn't say how bad it was. Do you know what your best corrected acuity is in both eyes? Posting that would be very helpful. I think you're going to have to accept some loss, but I'm thinking, with the other eye ok, you should not be seriously disabled. With both eyes open, is there anything you can't now do that you used to be able to do? w.stacy, o.d. > And I simply cannot give up hope and simply > accept my vision loss. It's too difficult and I am > too stubborn. > It's not entirely clear from your posts exactly how much vision you've > lost. I must assume the other eye is perfectly fine, and you've lost [quoted text clipped - 5 lines] > the other eye ok, you should not be seriously disabled. With both eyes > open, is there anything you can't now do that you used to be able to do? If I had her problem I'd be troubled too. Reading is pretty much what I do most of the time. If the central vision in my good eye went belly-up I would be seriously handicapped, although an illiterate might not even notice the problem. > > And I simply cannot give up hope and simply > > accept my vision loss. It's too difficult and I am > > too stubborn. Good luck in your search.  SignatureCheers, Bev *********************************************************** "Everyone ought to stop and smell crayons once in a while." -- DA > If I had her problem I'd be troubled too. Reading is pretty much what I do > most of the time. If the central vision in my good eye went belly-up I would > be seriously handicapped, although an illiterate might not even notice the > problem. Sounds a little like hysteria. She did NOT lose the central vision of her good eye. Why would you say a thing like that???? bill "X-No-Archive: yes" Are you talking about hysterical blindness? And yes, I did lose central vision in my right eye. And yes, I still have perfect vision in my left eye and for that I feel very fortunate. I'm not looking for sympathy right now, I'm just looking for answers. The doctors I have seen were not very optimistic about my condition, and I just can't believe that this most recent episode occured while I was IN the hospital undergoing an angioplasty and carotid stenting. The only solution I was given to save my vision was to breathe into a paper bag and massage my eye. Doesn't that seem a little strange? And with all the different types of retinal and laser surgery, why can't they come up with a treatment for partial or complete blindness? To paraphrase Chris Rock, blindness is one of those diseases that doctors just gave up on--instead of treatment, they give you a dog to lead you around! I used to think that was funny -- now I realize it's not so far off from the truth! > "X-No-Archive: yes" Are you talking about hysterical blindness? And > yes, I did lose central vision in my right eye. And yes, I still have [quoted text clipped - 11 lines] > used to think that was funny -- now I realize it's not so far off from > the truth! I would think that you would be of greatest risk during or shortly after such angioplasty. You have all this crap in your artery waiting to peel off and find its way to almost anywhere. You may want to contact a medical malpractice attorney. I would think that it is rare for such angioplasty to be necessary in such a young, especially female, person. My guess is that you have a strong genetic disposition toward clogged arteries. Are you going to have the discipline to keep to ccorresponding low clog diet? My unprofessional opinion is that current standard medicine has little to offer you. I am sure you can find many quacks waiting to offer you alternatives. It would be best if you avoid them, especially those who are true believers and not merely out to make money off of others' misery. Out of curiosity, was the angioplasty carried out on only one artery? If so, is the affected eye on the same side? Bill Yes, I had the angioplasty and the carotid stenting on the right side because I was having TIAs that were causing the emboli to travel into my right eye. I had cancer and radiation treatment as a baby, which is why my carotid arteries (which were in the field of radiation) are so narrow. (This is something that I wasn't aware of until recently -- I have extremely low cholesterol levels, which is why this was all so surprising.) I may choose to have the stenting on the other side as well, because I"m desperately afraid of losing vision in my left eye. The funny thing is that I'm extremely healthy, have a healthy diet, normal weight, exercise regularly, etc., so all of this has come as a complete shock. Has anyone heard of practicing tai chi, qigong, yoga, meditation or breathing techniques to improve vision? Just curious. k. > Has anyone heard of practicing tai chi, qigong, yoga, meditation or > breathing techniques to improve vision? Just curious. I've been here for awhile. I'd suggest that Tai chi will help your thighs and sense of balance. Most likely you will gain strength and not fall much. This after years (2) of practice with a good teacher. Vision improvement ....no. But never listen to anyone here go / check it out !! Bill SignatureGarden in shade Zone 5 S Jersey USA Long -75.0246 Lat 39.637876 Enjoy http://terrafly.fiu.edu/ > Dear Dr. Judy, > Thank you so much for your answer. I'm [quoted text clipped - 3 lines] > suffering from a Branch Retinal Artery Oclusion. > Do the outcomes for both of those conditions vary? Sorry, comes of reading the acronym too quickly. BRAO leaves the affected tissue totally deprived of blood and it dies within hours. As retinal tissue is central nervous system tissue, it does not regenerate. Sometimes not all the tissue dies, there is swelling and loss of function until the swelling subsides and then some function returns. However, it is unrealistic to expect a lot of recovery, and you can expect to have a permanent field loss. If the BRAO was recent, you may get some mild recovery over the next 6 months. > And what tests can doctors do to tell if the tissue is > irreversibly damaged? Is it different from a fluorescine > angiogram? Is it a non-invasive procedure, or do > they actually have to remove some of the tissue > to determine the severity of the damage? Fluoresceine angiogram and field tests document the extent of vision loss. ERG can document loss of retinal function. > And I simply cannot give up hope and simply > accept my vision loss. It's too difficult and I am > too stubborn. I have > a two year old, whom I'd like to be able to see > clearly as she grows up. I'm a writer/editor whose > job function relies upon my ability to see clearly. Usually central acuity is reasonably good with BRAO. You have the vision in the other eye. The condition is not progressive, unless you do not deal with the underlying systemic cause of the emboli. As far as writing goes, even totally blind people can read/ write/ edit with the use of voice interfaces with their computers. > I truly can't believe that the only suggestions I've > been given by doctors at top Boston hospitals [quoted text clipped - 5 lines] > With modern medicine being > what it is, how is something like this possible? Modern medicine cannot bring back the dead. Your main concern should be treatment of any underlying disease -- the conditions that cause narrowed carotids and emboli can also cause stroke, heart attack and death. Modern medicine is very good at treating vascular diseases and preventing further loss, disease and death, not so good at reversing loss after it occurs. See link below for discussion of BRAO and systemic disease. http://www.emedicine.com/oph/topic385.htm Dr Judy > I am a 31 year old woman who recently had carotid stenting > on my right side due to a narrowed and ulcerated carotid. [quoted text clipped - 30 lines] > Is there anyone out there who's had/seen/treated/heard > about a situation like mine? Please let me know. I am not a health professional. I do suffer from CRVO in one eye. Even so, I am able to read with my bad eye alone using a magnifier. I was more than double your age when that hit. I think that I miss acute central vision more than I would my peripheral vision if it were gone. Unfortunately, you are finding out at a relatively young age that the capabilities of modern medicine are often greatly exaggerated. Miracles are possible if your ailment is one of those for which a curative or palliative treatment is available. Although I do not agree with Otis Brown, I do believe that modern medicine has been aided more by engineers, scientists, or physicians doing engineering type work than from day-to-day practicing physicians, That is not to denigrate the work frontline physicians in implementing these discoveries. Just to mention a few: Civil engineers who provided clean water and sewage disposal. John Snow, a surgeon, who observed how cholera was spread. Louis Pasteur who had many physicians as enemies. Semmelweis, a physican, who had many physician enemies amongst his colleages. There is some hope that more such world changing iconoclasts are still to be found. Right now, the best slim hope for you is probably in fetal stem cell research. We know how well received that is among those currently ruinning our country. Bill
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